Half of those living with HIV in the US will be over 50 by 2015. Many long-term survivors never expected to live so long and are struggling with symptoms of post-traumatic stress. Andrew Bowen reports from San Francisco.
Tez Anderson smiles as he greets a small group of friends at Church Street Cafe in the Castro, San Francisco's historically gay neighborhood. It's Saturday morning, and his activist group is holding its weekly social meet-up.
"It's a very informal gathering, no agenda topics, we just hang out and chat," says Anderson. "It's a purely social time for everybody to hang out and discuss whatever's on their minds."
Anderson, 55, is the co-founder of Let's Kick ASS - AIDS Survivor Syndrome, a group dedicated to raising awareness about the psychosocial issues faced by long-term survivors of AIDS. Over about two hours, around a dozen people stop by the group's table and talk.
AIDS survivor syndrome is a term coined by Anderson himself, meant to describe a variety of symptoms experienced by individuals who survived the deadly years of the AIDS epidemic in the 1980s and 90s. These include depression, anxiety, nightmares, thoughts of suicide and lack of future orientation - all of which correlate to post-traumatic stress disorder (PTSD). While the term is not recognized by the medical establishment, Anderson says his group is working with researchers to design studies that would explore the issue.
Surviving the epidemic
Tez Anderson grew up on a farm outside Atlanta, Georgia, and left home at 17 when his father rejected him because of his sexuality. He moved to San Francisco for a relationship when he was 26, and tested positive for HIV a month later. Little was known about the virus at the time, and with no treatment available, doctors told him he had about two years to live.
"But after two years of having HIV, they said to me, 'Maybe two more years,'" he says in an interview at the Let's Kick ASS office in San Francisco. "And that happened five times. So that was 10 years going by - and I had sicknesses, I had illnesses, I had things go wrong with me. Yet I kept on surviving."
Tez says this gave him a shortened expectation of his life. He never went back to college to finish his degree, which he had broken off when he moved to San Francisco, and he didn't save for retirement. At the same time, he was experiencing the trauma and grief of losing dozens, and eventually hundreds, of friends to AIDS.
The mid-1990s saw the discovery of a new class of anti-retroviral drugs to treat HIV, as well as the "cocktail" - a mixture of drug therapies that is more effective at stopping the virus and less likely to create drug resistance.
"It was kind of remarkable, because a lot of people, myself included, started to get a lot better in a matter of months," Anderson says. "It was almost a party in [San Francisco] at that time, because it was kind of the end of death and dying. Or so it seemed."
AIDS falls out of focus
As the American gay rights movement shifted its political efforts toward issues like same-sex marriage and the right to serve openly in the military, survivors of HIV and AIDS fell out of focus, Anderson says. That's when he began to experience the worst effects of AIDS survivor syndrome.
"I was planning all these elaborate ways by which I could accidentally on purpose kill myself," he says. "When I started really writing down plans for that, a bell went off that said, 'Something is really wrong here. You need to decide if you're going to live or you're going to die.'"
Anderson went through therapy to address his issues with depression, anxiety and sleep disorders, but it wasn't until he saw a TV special on PTSD among Iraq War veterans that he made the connection to his own situation.
"I've been through a damn war that wasn't a war, and there was not a name for it except HIV," he says. "And we were all busy treating the medical, with support groups around dying, but the aspect of post-traumatic stress wasn't even in the zeitgeist. No one was talking about that."
'The future we never dreamed of'
Anderson says the name for Let's Kick ASS came to him in the shower, and that he ran to his computer dripping wet to register the domain nameletskickass.org
. He and two friends organized a town hall event in September 2013 in San Francisco to gauge interest in the issue and were shocked when about 250 people showed up.
"It was at that moment that I realized this was really a big deal," he says. "I saw people seeing people they had not seen in a long time … People were coming out of their isolation and getting together and finding community again."
Let's Kick ASS then held a series of monthly town hall meetings, as well as a number of social events. It's now a registered non-profit and plans to start fundraising to support a paid staff and more programming. Anderson says working for the organization has given him purpose, and that he's no longer taking anti-depressants, anti-anxiety medications or sleeping pills.
"I'm a really happy person," he says. "I'm in a peaceful place. And my husband's happier because I'm happier. Life is really, really good … We say we're envisioning the future we never dreamed of."